cautiously optimistic iZ update ..... (long of course!!!)

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Posted by iZ's mom on March 10, 2000 at 11:06:53:

thought i'd update y'all on iZ ... he seems to be doing pretty good, tho i am pretty much stuck in the constant-worry-mode + am afraid to say that too loud ... *weak grin*

i quit giving him the liquid Amphojel cuz he aspirated some one night and i'm just not gonna risk that again ... he tries to be patient with me but just can't stand any more Amphojel ... *sigh* ... the compounding pharmacy seemed like a great idea (to get solid-form meds) but they are having a major problem trying to get ahold of the drug ... i don't understand that at all + am frustrated to the max ... so today i'll get back on the phone and see if i can find another supplier ... i *am* still very concerned at signs/symptoms i'm seeing and feel iZ *needs* to be on it ... still holding off on antibiotics for now ...

for the most part, iZ is looking great + feeling pretty good ... am concerned at some patches on his thighs that just can't shed right ... (that was one of the 1st signs when he got sick) ... his legs are getting miracously better + better! *YAY* ... a couple weeks ago when i was worried about them, i also started noticing his toes where getting darker ... eeeek ... decided that it was due to blood flow being restricted by his toes not shedding properly + so one night, wrapped him in a towel and as gently as possible, got the toe sheds loosened ... it was a pretty awful, long drawn out experience ... (the renal disease affects the shedding process and the shed doesn't dry out all the way + loosen) ...

the *up* side is, that since then, the normal color has returned to his toes *AND* he is no longer hyper-sensitive to me touching them, his feet *+* his legs! ... am thinking it was prob'ly painful to have them so constricted by the non-shedding shed + that has been resolved ... he actually lets me gently massage his legs when he's in the tub now + even seems to appreciate it (instead of just "put up with" it) ... his 'calves' are also now getting stronger and the muscle tone is returning ... slowly! but returning ... am no longer concerned that those muscles are atrophying ... *whew* ... his legs are still not as strong as they were/should be ... but man! does he have upper body strength to make up for it!!!!! he tried to climb the stairs last night + couldn't get it + i had to help him ... he was really frustrated + angry ... but it was really good to see him think of it on his own + give it a try ...

i weighed him the other night and about fell over!!! he is back up to ***11.5 pounds!*** ... that seems near impossible since he was just finally at 9lbs a couple weeks ago ... i don't know ... i weigh *less* on the scale than i did 3 weeks ago, so it's not the scale weighing heavy ... hmmmm ... so of course, i can find stuff to worry about ... like maybe it's his kidneys swelling up again that made him gain so much so fast???? i don't know ... i can't palpate them, so that's still good ... doesn't *seem* to be fluid retention ... oh face it, i'm nuts about this whole thing still! *weak grin*

he's eating ALOT on his own + am still mixing up 'special ig high calorie' food ... pooping good ... not so thirsty like he was ... sooooo ... we're hanging in there!

took some great pix + now have to wait for hubby to get paid so i can get them scanned + posted ... got some of iZ's room + all it's ramps + of iZ in the tub with his blue blanky + iZ getting fed up with the camera and open-mouth hissing at me ... *grin*

and that's about where we're at for now!
(chants for the pharmacy to find Aluminum Hydroxide will be appreciated! heheheh)

me + iZ

Follow Ups:

yeah iZ! Joan 03/10/00 (0)
We are ALL pulling for you and the iZster. So glad he is improving. Chin up Mom! nm Thumper 03/10/00 (0)
I never could find non-liquid Aluminum Hydroxide T and Q 03/10/00 (0)
Relax a little Dr.Mom,,,,, cirsisue 03/10/00 (0)
good for Iz :-) n/m xta 03/10/00 (0)
Thanks for the update! jif 03/10/00 (0)

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: thought i'd update y'all on iZ ... he seems to be doing pretty good, tho i am pretty much stuck in the constant-worry-mode + am afraid to say that too loud ... *weak grin* : i quit giving him the liquid Amphojel cuz he aspirated some one night and i'm just not gonna risk that again ... he tries to be patient with me but just can't stand any more Amphojel ... *sigh* ... the compounding pharmacy seemed like a great idea (to get solid-form meds) but they are having a major problem trying to get ahold of the drug ... i don't understand that at all + am frustrated to the max ... so today i'll get back on the phone and see if i can find another supplier ... i *am* still very concerned at signs/symptoms i'm seeing and feel iZ *needs* to be on it ... still holding off on antibiotics for now ... : for the most part, iZ is looking great + feeling pretty good ... am concerned at some patches on his thighs that just can't shed right ... (that was one of the 1st signs when he got sick) ... his legs are getting miracously better + better! *YAY* ... a couple weeks ago when i was worried about them, i also started noticing his toes where getting darker ... eeeek ... decided that it was due to blood flow being restricted by his toes not shedding properly + so one night, wrapped him in a towel and as gently as possible, got the toe sheds loosened ... it was a pretty awful, long drawn out experience ... (the renal disease affects the shedding process and the shed doesn't dry out all the way + loosen) ... : the *up* side is, that since then, the normal color has returned to his toes *AND* he is no longer hyper-sensitive to me touching them, his feet *+* his legs! ... am thinking it was prob'ly painful to have them so constricted by the non-shedding shed + that has been resolved ... he actually lets me gently massage his legs when he's in the tub now + even seems to appreciate it (instead of just "put up with" it) ... his 'calves' are also now getting stronger and the muscle tone is returning ... slowly! but returning ... am no longer concerned that those muscles are atrophying ... *whew* ... his legs are still not as strong as they were/should be ... but man! does he have upper body strength to make up for it!!!!! he tried to climb the stairs last night + couldn't get it + i had to help him ... he was really frustrated + angry ... but it was really good to see him think of it on his own + give it a try ... : i weighed him the other night and about fell over!!! he is back up to ***11.5 pounds!*** ... that seems near impossible since he was just finally at 9lbs a couple weeks ago ... i don't know ... i weigh *less* on the scale than i did 3 weeks ago, so it's not the scale weighing heavy ... hmmmm ... so of course, i can find stuff to worry about ... like maybe it's his kidneys swelling up again that made him gain so much so fast???? i don't know ... i can't palpate them, so that's still good ... doesn't *seem* to be fluid retention ... oh face it, i'm nuts about this whole thing still! *weak grin* : he's eating ALOT on his own + am still mixing up 'special ig high calorie' food ... pooping good ... not so thirsty like he was ... sooooo ... we're hanging in there! : took some great pix + now have to wait for hubby to get paid so i can get them scanned + posted ... got some of iZ's room + all it's ramps + of iZ in the tub with his blue blanky + iZ getting fed up with the camera and open-mouth hissing at me ... *grin* : and that's about where we're at for now! : (chants for the pharmacy to find Aluminum Hydroxide will be appreciated! heheheh) : me + iZ

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